I am a Kentucky mountain girl far from home, perhaps far from the girl years. Still, my heart longs to return to the top of Low Gap mountain and peer off into the distance; to see the hills rolling and tumbling out before me, and the wind ruffling the trees' leaves, causing them to ripple like waves in some immense pond.

Monday, August 20, 2007

Many people throughout my life have asked me what it was like to be me, a person with a disability. Even though I told them I hurt somewhere every day and some days were worse than others, they would nod, but it was quite plain to see by the look in their eyes they didn’t get it. It wasn’t them, of course, and it wasn’t me. It is impossible in many respects to explain what it is like to be disabled/handicapped; it is just as impossible to explain what it feels like to be black, Asian, or just plain white.

For many years I didn’t even try to explain it because I had grown quite accustomed to the looks in their eyes when they didn’t get it, and if I attempted to explain it at all it would be only to the people who genuinely seemed interested in wanting to know. These people were usually my closest friends, or those on the border of becoming a close friend. Still, despite their desire to understand, they couldn’t, and they seemed, looked sad because they couldn’t understand.

Recently I made a comment to a friend about feeling tired. He said, “So you’ve run out of spoons for the day?” I didn’t understand what he meant. “I read something that sort of explains to me how you are. I’ll find what I read and send it to you in an e-mail link.

He was good to his word and sent the link to me, and now I am passing it along to you because it does explain what it feels like to have a disability.

This woman has Lupus, which, according to the Arthritis Foundation web page, is lumped in with arthritis. I have rheumatoid arthritis so the fatigue she talks about and how you have to plan and that your back-up plans have back-ups are quite accurate.